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Friday, June 8, 2007

Death By a Thousand Paper Cuts

Ellie's name FINALLY slithered its way up on the speech therapy queue, and the SLT (speech language pathologist) came over to our place the other day to perform his initial evaluation. Yay, whoop, yee haw, right?

It was going swimmingly until the end. Daniel (SLT) was putting on his shoes to leave the house (after being here for over two hours, wow!), and said, "Ellie's receptive language is so acute that, even if she would need augmentative communication devices in the future, she should have no problem learning how to use them."

This is what Richard deducted from that comment: "Ellie is as smart as a whip!"

This is what *I* deducted from that comment: "Ellie will never talk. She will need to use a bulky computer that sounds like the robot-girl from Small Wonder in order to communicate. Because she will be non-verbal, she will never be able to tell you when she has to go to the bathroom, so you can expect her to be in diapers forever. Thus, she will never have friends, and her life will be terrible. See ya next week!"

Of course, I realize that our fresh-out-of-college, soft spoken, super-encouraging SLT was trying to tell us that Ellie's potential is enormous. He was trying to point out the positives and swish his verbal pom pom's, cheering us on. I'm not sure why, then, I took his words so hard. I truly felt like I had been punched in the gut (perhaps his pom poms were made of lead?).

Just when I think I've got it figured out, and that my heart is "okay" with Ellie's disability, I get side swiped and am forced to face the grieving process all over again.

To quote my dear friend, H, whose son has cerebral palsy, "I get sick with dread every time someone does an evaluation: I remember sitting and crying one day that I felt like the experts just dropped by every now and then to take another piece of my son away from me. It felt like death by a thousand paper cuts."

The cuts from the first few wounds (finding out about Ellie's brain damage, knowing that she would never walk "normally", being told that most physical movements would be difficult for her) are starting to heal. The scars will forever remain, but even the bandages have been ripped off.

It's the "new" cuts that make my heart bleed from the core. The possibility that Ellie may not communicate verbally. The chance that she may always test behind on her IQ tests. The likelihood that she may never be able to type out an email (her occupational therapist hinted that Ellie may not ever have the speed or dexterity in her hands to type on a "regular" keyboard). Slice, slice, slice.

I realize, of course, that NO ONE knows what Ellie will do. I pray EVERY DAY that she will amaze each doctor and therapist by what she accomplishes, both physically and mentally. But, right now, I still grieve. And hurt. And bleed. Because the unknown is scary. Because God doesn't always heal. Because I don't want to see my sweet Ellie struggle any more, yet know she will.

I suppose my bandage is hope. I hold onto it with each blood-stained finger.

PS: Thanks, H, for your ever-so-articulate words of love and understanding, and I hope it was okay for me to use them here. No one says it better than you do, after all!


Kathryn said...

It's true you just can't predict. Either way the journey will go on with you and it's not like she is going to ever be anyone less dear to you. I used to be a little afraid of what my Ellie would become. I had images from my past of disabled people who I never really understood and that was scary. But each day even my Ellie is still the most loving, sweetie of a daughter. We are in it together and when I am with her I feel like all is well. It's when I am away from her that I worry.

Not much help I know, but I truly do think there is such a huge positive gain from going through such difficult and off the beaten path experiences which of course you would never sign up for. I look at your little Ellie and know she is filled with love and easy to love and she will always be.

Ok -off soap box. But I do hear you and have been in a similar place myself. You are not alone.